Whole body muscle weakness/atrophy on right side

I feel your pain. The doctors I have seen don't want to help me either. Hang in there.

To address the fact that people haven't returned or responded to you... Maybe they missed the email notification. Maybe they forgot they made the post as they were posting on multiple different websites about their issues. Maybe they haven't bookmarked or kept the page open. Or maybe they have forgotten their login and are not able to reset it due to lost email password or lack of technological skills. I have just had to reset my password to write this and it enforces a strong password which I will probably forget. It also makes you enter a memorable word which complicates things further.

I sympathise with what you're going through 100%. Every day is a struggle mentally and physically. Add on work and other responsibilities and it sometimes feels like too much. Don't be afraid to rest if you need it.

I too am noticing progression and no doctor seems to give a F. It's infuriating but there's nothing I can do. I try not to feel too much self-pity or victim mentality but sometimes that is hard due to the reality I am living.

The most recent developments are facial drooping and thinning on the affected side, seen mostly on the mouth/lip, eyebrow, cheekbone, nostril, jaw muscle, scalp tingling/numb feeling over one side of the head. Headaches due to activity, fast heart rate without increased breathing reflex, staggering while walking, loss of morning erection, loss of strong erection, decreased semen amount and ejaculation force, painful sex, general pain in penis with probable atrophy, smaller testicles, short sexual stamina, fractured teeth, frequent deep breaths/sighs, slower eyelid on affected side. I have had an eyelid twitch in the inside upper corner of my eyelid for about a week that has been driving me insane.

Seems to happen more often when i move my face in some way, smile, talk etc. Indicating facial nerve involvement. This is the same affected side i get a rumbling tinnitus noise in my ear and sometimes visual disturbances in the eye. The other day i was seeing stars like i had just got up too fast but i was sat in my car for about 20 minutes. i also mainly get left sided headaches when i try to be a normal person and be more active.

I think it would be wise to get conditions ruled out by their respective specialists. For example not every neurologist is an ALS specialist.

I also think it would be wise to see someone who specializes in Parry Romberg syndrome, and amyloidosis as I dont think a neuro can say it isnt these without consideration by their respective specialists.

I also think there may be some truth to the carotid artery stenosis as mentioned by someone previously.

This would limit the bloodflow to the brain and would present in a degenerative fashion and may get worse on one or both sides if both arteries are affected. Eventually leading to stroke from artery plaque travelling to brain or from carotid or other artery that is blocked.

I think each of us here could even have slightly different presentations. Each with different causal factors.

E.g. someone without facial involvement may have a completely different thing than those with.

Some may have the same symptoms but different diseases/causes.

I just plan on doing my best without pushing too hard and hopefully I will survive long enough and with any luck there will eventually be some obvious signs that are found and a diagnosis can be made. I pray for treatment but im not hopeful.

You are all in my thoughts and I'm glad I'm not alone.

What do you all think about creating a reddit community for all of us where we can rant and vent and discuss ideas/findings? For those that dont know, reddit is a website where pages of any topic can be created and discussed by many posters. They(we) can also post in the doctors/specialist reddit pages for advice. That could very well point some of us in the right direction.

I am also worried about cancer. Since the symptoms are so vague and widespread affecting multiple systems (digestive, nervous system, muscles, breathing, fatigue, sexual, bones, pains, weakness) I worry that i have an undiagnosed cancer that is spreading and no one is helping me. I worry about lymphoma as that can cause systemic and nervous system symptoms.

I have some small lumps under the armpit area and on the sides of my neck. My GP is not interested 😦

Agree with all you said. I also have all of the symptoms mentioned. My penis "broke" in March of 2019. When I say "broke," I mean I woke up with no morning erection. Ever since my genitals have been dwindling and my ability to have an erection is like 20% of a real erection and my sperm/ability to shoot it out has lowered in volume and pressure. As you said - this affects the totality of my body. My left side feels hollowed/is more affected. My right side has shrunken too; however, it doesn't feel hollowed or "weak." It's strange because I've been touching the left side of me lately with my right hand have been touching the right side of me with my left hand. Believe it or not it changes my "feeling" of fullness on each side. My left side feels MORE full if I touch it with my right hand compared to my left. Though it's obvious by muscle wasting and whatever else that my left side is more cursed than my right. I just got an ultrasound of my lymph nodes (?) under my armpit and will reveal the results. I posted that they recently started having protrusion like "balloon" look underneath my armpits about a month ago. My ignorant/egotistical and emotional doctor thinks it's fat. LOL. I need a new doctor. It's hard to know how to vent one after having seen this guy for 20 years.

Yep. You are in the United Kingdom? I'm ignorant to the terminology of United Kingdom/Great Britain. I just assume United Kingdom = Ireland/Scotland/Britain? Either way, here in America the doctors only care about profits of their employer and not the actual health of their patients. I think I've been getting neglected purposely. If that's the case those I've seen will see me again before I fall for good.

Are your knuckles nasty and sunken in like mine? They look worse than my grandpa's who is 95. I've had a lot of tests since this began: (2) MRI of brain, (1) MRI of top portion of spine, (multiple) blood tests, (1) colonoscopy (just recently), nerve tests to detect if my nerves were working for muscles etc., and lastly an eye exam because my eye sight seems off like you were saying. I start out feeling okay when i wake up and I become progressively worse feeling as the day goes on. I don't get headaches per se; but, I do feel cognition issues in focusing and other such things. Light headed feeling and all that. According to your posts you have the same problem as I, and me as you. I also fear that this has gone on so long that once I find out it'll be too late. My problems REALLY started happening around the time of March of 2019. I suspect they began around 2018 though.

The problems we have may not share an identical cause or an identical set of symptoms. They just may be similar enough for us all to be here.

My hands have atrophied quite a bit and if i open my fingers or lift my toes upwards you can see the tendons pop out like strings. Much more prominent on the weak left side.

My symptoms are such that it's now affecting my breathing. I take shorter shallower breaths and frequently take larger fuller breaths when i feel out of breath just sitting here. This probably doesnt happen during sleep though and i suspect my oxygen levels drop as a result.

I used to think it was a weak dia

I used to think it was a weak diaphragm, but now im starting to think I've got an enlarged spleen.

the spleen may be so large that its impeding the movement of the diaphragm and reducing lung capacity significantly.

At least thats what it feels like on the inside anyway.. like there is something stopping me from inflating my left lung.

I also get an uncomfortable fullness feeling after eating. Sometimes with pain just under the left collarbone towards the shoulder. This pain worsens when I inhale.

Wonder if anyone else can relate to this. Feeling like you have to reinflate your lung every morning and then it slowly deflates throughout the day causing frequent deep breaths.

I'm so angry and upset because I have visited many doctors of different kinds both NHS and privately paid for since the beginning of all my problems and I havent got anywhere.

I dont know how I have lasted so long to be honest. A year or so ago I was convinced I would be dead within a year or at the very least have a terminal type diagnosis. But no, I'm still here, and im still living this hell every day, no one helps, no one acknowledges, i've just got to pretend like i'm fine.

May go to emergency room with pain, maybe they will scan and see something.

I just want help 😭

The pressures of work and home life take a huge toll on my physical and psychological well-being and the struggle to continue on despite weakness, pain, breathlessness, fatigue, and just an overall failure and inability to perform creates a sustained ever increasing level of helplessness that leads to eventual emotional breakdowns and suicidal thoughts.

I just want to curl up and die sometimes, I can't keep going on like this dragging myself around feeling unwell and disabled. It's not worth the amount of effort.

I don't want to waste what I have left dragging myself to work and struggling when I could be otherwise diagnosed with something and getting the help I need to enjoy a fulfilled life for the time I have left.

It's tragic to be honest. A lot of people are in the same boat it seems, but it does seem like that boat is slowly sinking and there's nothing we can do about it and the lifeguard station are saying the boat is reporting that there are no errors. I'm sorry for the analogy but you get the idea. It's gonna sink and no-one will know our stories.

Our families will say nothing, even though we have been desperately honest with then about it all. After all we had no diagnosis so the death would be a shock to most. Just another surprise to everyone. Everyone but us.

I've had breathing issues for a while too. Around 1.5 years now. I can breathe fine; but, I have to breathe faster/deeper for no good reason. It worsens when I lie down. I can't really sleep on my back anymore even though I switched to my sides long ago because they claim it's better for your back. My lopsidedness makes it uncomfortable to try and sleep on my back. I suppose oxygen levels to the left side of the body interrupted could do something. I brought this up when I had gotten my stress test/heart pictured two months ago and the doctor dismissed it of course. I showed him my nasty knuckles and he said it looked like a tendon issue. These guys just say anything. Of course they said my stress test and heart picture came back normal. Of course! Even though my heart has been beating quicker since I lost my ability for an erection in March of 2019.

I forgot to add I used to be more muscular than the average person. Even before I started lifting weights at age 10 I was naturally stronger than almost everyone I interacted with in school. I used to have big muscular hands up until this. I lost the muscles in my hands in the summer of 2020. Now I have scarecrow hands.

I am forced to breathe harder/deeper. I don't notice a change throughout the day though. My breathing issue is consistent. Though it's not hard to breathe. I did have Covid-19 a few months ago and for some odd reason I never had breathing problems or oxygen issues. The oxygen level at its lowest was 93%. Most of the time it was 94%-96%. So strange. I also will add that I too have tinnitus in my left ear. It occurred in my right ear a week after it started; but, it disappeared mostly and it is consistent and loud in my left. This has been going on for four months now. The warning sign before this was a year ago when I would yawn or do some physical activity my left ear would pop and have that echoing sound. I knew this problem was punching my left ear at that time. A year or so later now my left ear rings non stop. It took me a few weeks to adapt because at first I couldn't sleep without an aid.

These doctors are also disappointing me highly. I've seen three mainly since this has begun. My 20-year (as in; seeing him for 20 years) physician, my neurologist (and I had gotten a second opinion from another), and lastly a specialist. None of these acknowledge my problem and even gaslight me into trying to trick me into saying it's all in my head. These doctors are egotistical and emotional and can't see past their own pride. They will be remembered before I expire. These modern doctors (though my main physician isn't young compared to the other two) are only about themselves and whatever can feed their narcissist personalities. When I find out my problem they will get a just reaction for neglecting me.

My constipation has worsened severely. As my only motivation to "go" is when it's at the very tail end of my colon. And even then, waste has been getting stuck and I can no longer empty out completely (or possibly even near). I've been using stool-softeners and they come with drawbacks too. When I do take a week break from stool-softeners and I do go - my waste comes out like garbage. Nothing like a normal waste ridding as it was before around six months ago. I did just have a colonoscopy five months ago. It seems progressively worse after that. I'm unsure if it's because my muscles are atrophied on the inside or if my body has narrowed inside so much that the waste can't get through like normal.

True. I see how little people care about me when they don't even acknowledge my issue. These people have no clue of the ghost haunting our bodies. I'm now half a man. Since my left side is mostly a ghost now.

For me there’s only a certain number of things it can be. So surely it should be diagnosable.

Its either:-

• vascular
• brain
• nervous system/neurology
• auto immune
• digestion/malabsorption
• cancer
• muscular

I think those are the most obvious causes.

I cut the grass yesterday so I wouldn’t feel like a complete failure. Had to take multiple rest periods. Felt like I had run 7km. Legs were shaky to stand on afterwards, especially the weak one.

Holding myself straight was quite difficult. But I did it.

Hang in there.

I have some tips for constipation.

I was on various tablets and softening drinks for quite a while but that just turned my stool into mush.

I dont take any laxatives routinely now. I cut them all out. You can become dependent on them and your bowel can become 'lazy'.

I only occasionally use one if I am desperate.

1. Eat a cereal called 'All Bran' Every day. Its like little sticks of pure fibre. You can adjust the amount accordingly so the stool isnt so grainy. It isnt the best tasting but helps a lot.

2. Drink a cup of english tea with milk and a teaspoon of sugar when you have woken up. Drink on an empty stomach.

3. I have had to switch to decaf tea as I cant tolerate any caffeine at all anymore. (racing heart etc) Drink it slowly but as hot as you can tolerate. wait 10-20 minutes. The tea still helps even without the caffeine so it may be the milk, heat, or tea ingredients or a combination of these that help.

4. If this doesn't give you the urge then eat a banana. I find the tea and banana trick help to keep me more regular.

5. If still nothing do some walking around and bending down.

6. If all else fails drink some prune juice. This will introduce water into the bowels.

   warning, drink a small glass as this can cause diarrhoea.

7. If you are still struggling try Glycerin suppositories. These are the only laxatives I use if I havent been for 2 or 3 days and im passing nothing but pebbles.

   You have to put it where the sun doesnt shine, lay down and try to hold it in for as long as you can until you have a strong urge. I find 5-6 minutes to be optimal as the urge can fade and you dont want that.

   They work by drawing moisture into the colon. Use these sparingly. At my worst I was using 2 a day to try and pass something significant. I tapered off by using the above tricks and now rarely need to use them. Maybe once every month or so. They work best if you arent taking a softening solution. I mainly just need the tea and banana now but sometimes need the cereal and suppositories. But thats how i got off of daily laxative use.

Hope this helps.

ps i find it helps to sit but leaning forward pushing some weight onto your knees with your forearms while keeping your back as straight as possible by squeezing your back muscles hard.

This and sitting up as straight as you can with your arms relaxed in your lap and relax your core as much as possible while breathing deep.

I also suggest chewing gum while on the toilet. But make sure your core is as relaxed as possible and you are taking full but not super deep breaths using your diaphragm. It took me years to perfect these methods but it works for me.

Good luck

Thanks. It's so strange how they said my two brain MRI were normal in August of 2020 and August of 2021; yet, it affects my left side more so than my right.

yes me too.

I dont know if ive mentioned it before but my sinuses seem to be affected.

It feels like and seems like my left nostril is always stuffy. In my mind its due to the atrophy of the nasal passages causing it to sort of collapse. This affects my breathing, singing and talking. As well as having a quieter, more high pitched shaky voice it vibrates in my left sinus and sounds nasal-y and muffled.

Obviously it goes unnoticed because my right side is more open/less affected.

Do you have something similar?

Yes. I had pain around my eyebrows a couple times in the past 1.5 years. I never had that problem before ever. Never had sinus issues etc. First time it happened for about four-five days. The second time it lasted two-three days. I just thought it was that part shrinking on me. My left ear is constantly ringing now. It's been that way for four months. My right ear rang for a while too and I think does sometimes still. My left is more affected.

Hopefully we don't have an inoperable nasopharyngeal tumor.

I want to get my pancreas checked next. After that my bladder and lungs. They say these three (beside brain cancer) can cause muscle wasting the most. It's just so odd how it's more so on one side than the other. Including the top of the head and bottom of feet. I suppose it depends on the area if a tumor exists. If the tumor exists on the left maybe it affects the left side of the body more than the right. Obviously I want to avoid all of these possibilities. I need to be checked all over though. Tomorrow I see someone else and will make my demands.

The most annoying part is, doctors suggest that we may have hypochondria aka health anxiety and that explains why we are ordering all these tests.

While there is an element of truth to that, I AM severely anxious about my health now, I never was before all this began.

I dont order a test because of mental illness, worry and too much focus on illnesses.

I order a test because of an ever growing list of symptoms that are impacting my capability to breathe, digest, move, talk, and live happily.

I order the tests because no one wants to help me find the problem or halt the symptoms. Its out of sheer desperation and playing the role of being your own doctor because your actual doctor is not helping. Thats why i order any tests. I dont want to order even 1 test I want a doctor to do his F'ing job and rule things out to come to a conclusion/diagnosis. But they dont do that. Instead my concerns are dismissed, my growing list of symptoms is dismissed and my reality that I am living through is dismissed. Its gaslighting 101.

Thats why we're so angry, anxious and depressed. Zero affirmation of what we're going through.

From where I was when i was fit and well to now is quite concerning and as humans we automatically try to predict the future using imagination and logic/reasoning.

My logic and reasoning tells me that if I continue going in the direction I am going in I can only imagine that eventually the ever declining health will lead to death. There is no way of avoiding it. Unless something changes sporadically and I start improving or i get a diagnosis of whateverthefk and then get treatment if its available. I will end up dead. In my mind there's no two ways about it. Ive extrapolated the state of my body and list of changes into the future and they all have a sharp downward trend when this began, that can only result in mortality.

I pray for a fork in the road, a doctor that finds something and helps me, a food that heals me, an internal disease process that magically stops, a god to save me, ANYTHING.

But I dont think the fork is coming. There is no route to better health that I can see.

So down the same road I will continue, praying to find another path.

I wish everyone the best, dont give up on life even if its hard and unrewarding

Agreed. Last night I was going to sneeze and it never came out. That's never happened to me before. And of course I started having some pain in my left part of my face (left nostril area, left eye/brow area). The symptoms keep continuing and growing in a downward trend. It's obvious as f**k. Now I do think it may be a cancer that is on the left side and thus why it's affecting one side more than the other. As one side becomes dismantled the other will also dwindle - though, not as extreme as the side hosting the issue.

That is a possibility I suppose.

People would naturally assume that such a cancer would be more evident. i.e if years have passed since the onset of symptoms you would assume evidence would show up somewhere, in blood tests, scans or symptoms(e.g coughing blood indicate spread to lung, jaundice-spread to liver etc)

But some cancers dont metastasise(spread) and some take a period of time before they even enter the metastatic phase.

only if its a cancer that can metastasise does it enter that phase. and when is anyone's guess.

Part of the reason pancreatic cancer is so deadly is because it can remain in the pancreas for some time undetected, where it grows and eventually spreads causing vague symptoms symptoms. Only when it has spread elsewhere does it get detected. If someone has lung cancer and a scan is done and they find the huge pancreatic tumor and additional spread to the liver and brain. Or if it becomes large enough to blocks the pancreas bile duct to cause jaundice. By that point its too late to treat effectively.

I’ve considered a type of blood cancer such as leukemia or something like lymphoma, not sure how I could get tested and at the moment ive got too much on my plate with work and other stuff that I have stopped trying to get a diagnosis.

remember i mentioned my left eyelid twitch that wouldnt go away? Well now the left side of my upper lip is twitching.

towards the middle but on the left. its like a mini electric shock and quite uncomfortable.

To me that is progression. Progression of what? That I dont know. But it is manifesting neurologically affecting either the facial nerve itself or the muscles/nerves in my lip. The same side of the lip that has no life in it, feels empty, smaller and has a downward drooped appearance. Like a stroke victim but not as severe. I can move the thing, just not as strongly as the other half of my face, its weaker, shakier, fatigues more easily than the right.

If it starts in the tongue I will panic, im expecting it though.

Yeah. That's why I'm trying to get this detected A.S.A.P. My symptoms (to my knowledge) started in either December of 2017 or January of 2018. Either way - I'm feeling like it's over. Again tonight - just now, I had a slight feeling to sneeze and it just disappeared. The medulla is said to be the brain part of such a function. Strange seeing as I just had a brain M.R.I. in August of 2021.

I had gotten my underarm Lymph node ultra sound results back; it is said that they see no issue with them. Even though they just popped out for no good reason a month and a half ago. The note said I could get a further test (I forgot what it was) if I was still concerned. Of course my primary says I don't need the extra radiation. Like that s**t matters at this point. Getting worse without finding out what it is or getting added radiation. No brainer.

I'm seeing someone else next week and will bring up my motivation to get my pancreas scanned. I have had different breathing for a year or so now too. I can breathe fine, I just have shorter breath than normal. Little things make me have to breathe quicker/harder than it should. I don't cough or anything.

In relation to your twitching. The summer of 2019 my left leg would twitch when I lied down to go to sleep for about a month. I thought it was because I was drinking alcohol with too much consumption/repetition - my bodies way of telling me it was overworked. That's basically the second part of my initial phase of dwindling. My first was waking up one day in March of 2019 and having no morning erection. I'm in my 30's and I had never not waken up with a morning erection. Around this time I also had a sped up heart rate. At a point one night it was the fastest it's ever gone and I've always been into fitness at extreme levels (fast miles, heavy weights, quick sprints). So fast that I was too distracted to sleep. Had to get a sleep aid for a week. The following week straight it was also fast as hell. It was MORE fast when I lied down. It's gotten better to my personal perception - but, it's still faster than it should be erect or lying down. Of course I just got my heart pictured and tested via stress test and they say it looks good. Of course!

I had twitching in my lips for a few hours one day - then I realized they shrunk (more so on the left side than the right). I had twitch in my eyelids as well. This to me is a sign that they are losing matter and substance. We're living a nightmare and we don't even know the enemy that's going to put us out. Agreed with your stroke comparison. They say my brain MRI looks normal. This s**t is a nightmare and the ending won't be a fairy tale. This isn't a movie! My fear of dying can't be underestimated.

I forgot to add. The feeling of emptiness, weakness, and lifeless is how my left side is too. If I put weight only on my left arm to do a push-up it will shake and feel disconnected. I can still do normal things and even push weight that someone would perceive me as normal. It's the opposite though. It's as if someone is draining the life out of me. I'll type this again because it's an important note. When this first started it started on the part below my left knee. It went down and up from bottom of feet to top of the head. I was already cautioned by the spring of 2020 and I vouched to take a break from drinking. It was especially easy with the oncoming Covid-19 lock-downs. Places were closed; people were less likely to socialize etc. I began exercising and was increasing strength - but, I noticed I was still shrinking on my left side at one point during my six months of exercising. I awoke one morning and felt my left shoulder blade hollowed out. I ran on the treadmill and felt awkward the whole time because of the imbalance of fullness between left and right. After six months of putting full effort into getting stronger and still losing my body I quit. I drank at a friend's place the first day after six months of abstinence and the immediate next morning my entire right side shrank. My right side is NOT as bad as my left, it still feels "solid" and doesn't look as deflated, but it shrunk nonetheless in one swift night.

I can tell when an area is affected by this. A subtle feeling of something in the area like my lips, eyebrow bone area, cheek, leg, etc. My insides are affected too with obvious clarity. My ability to function normally is disappearing fast. I posted about the medulla portion of the brain being the apparent engine of things like sneezing etc. Maybe it's possible that is damaged and unseen on the M.R.I. Either way - I pray this is something that can be first identified and secondly treated. My thoughts are horrific for good reason. People on the outside have no clue no matter how this is explained. People are also emotional and try and downplay situations to motivate one to "work" through them. There is no working through this without proper identification, and even that seems like a far shot. It's easy for people to seem tough, logical and stoic outside of circumstances like this. I've never been a worrier or someone who was easily rattled. Now I fear I'm falling fast. Because I am.

I feel I may need to try and see a doctor in Japan or China. They seem to do the medical thing a little better than America/Europe. Though; me being a foreigner, they may not put the effort/care into me as they would one of their own. And may possible mess me up just because of the fact. Just a thought!

I wish I could edit posts. Wanted to add that the past three months I've been having issues as the day goes on. When I first wake up I feel okay. When night comes I start feeling it difficult to focus. I don't know what to call it; but, many times I'll have differences in lighting out of nowhere. Is that being lightheaded. Constant ringing in my left ear, occasional ringing in my right. Losing hair on my head/beard easily. I haven't shaved in three months because I'm depressed from my condition and I need my hair to hide my weak facial cranium now. I used to be a beast, strong all over, fast all over. Went from hero to zero!

This is my experience too. I was never the bulkiest but I was strong as hell for my size. Precise with my movements. Agile. Almost robotic precision with routine tasks like washing dishes, ironing, hoovering etc. I carried myself perfectly. Strong, confident, flowing walk. Great posture, Not the biggest or strongest guy in the room but confident in my strength, power and endurance. I used to binge drink to blackout stages in my younger years. I wonder if thats related.

Now I am weak, tired and unconfident and carry myself the best that I can but I can feel my legs and back are weak to hold me and im not as big as i used to be.

Not as broad or as thick in the chest. Smaller neck. Traps disappeared. Left lat non-existent.

I have also shrunk at least an inch. I wonder if thats something you can relate to?

I put it down to atrophy of skeletal muscle, atrophy of disc material, spinal curve, loss of joint supports, foot pad thinning ETC.

my height reduced along with my weight.

Yeah. I used to be 6'1. Now I'm 5'11.5. I think it's because we lost muscle on the bottom of our feet. I used to black out and drink too. I still walk as if I'm strong because it's important to have strong posture no matter how badly you are. I suppose our spines may also be a reason why we've shrunk.

My weight isn't really reduced though. I have actually been gaining weight because I eat a lot of carbohydrates. I'm losing everything but fat. I look like a balloon animal because I have no muscle anymore! Usually people have bags that puff out under their eyes. Under my eyes they're sunken in like a zombie. How long have you gone since drinking? I quit again 90 days ago. My neurologist thinks quitting might help. I doubt it though. Not everyone in this thread have drank excessively I'm sure. I quit before in the Spring of '20 for six months and it never helped.

Hi man, I have the same since 2018, otherway, you try genetic test? Can be a FSHD.

Hi man, so, like I tell the other buddy, you consider a FSHD? Try a genetic test.

Hmmm, never heard of it. Have you also gotten a genetic test? I first noticed the oddity in myself in 2018 as well. It's been four years since I've noticed; but, it may have started earlier. FSHD, anything able to be done about that? Seems like all of the possibilities is just a dead end when it comes to reversing this curse. I just want to know why it's affecting my left side all while my right side is affected - though severely less. I rather it be even, it sucks living in this s****y body of mine now that is uneven as hell.

No, I don't have a genetic test yet but i will get it to confirm my diagnosis, until almost 4 years I have multiple symptoms that freaking me out, but it's too similar to the people I've read in this thread, i didn't even know about this disease until 2 weeks ago, since then, cause I didn't have the money yet to a genetic test, for 4 years my entire right side of the body was affected, now, my left side in the left side of the neck and left shoulder, seems like affected, i feel pain and numbness in my left arm.

There is no cure yet, since 2019, fulcrum working to find a cure for this, i don't know the status of this cure, but, is approximated to release in 2025-2027

Oh thanks. Yes. My left side has been most affected. It feels disconnected and hollowed compared to my right side. Though, my right side has also shrunk. Bottom of feet to top of head. I've had many tests of course. I'll see if your suggestion relates to me. Thanks. Do you live in the U.S.?

No, I'm from Colombia, you m should try test for fshd ? u have mri in another part of your brain/head? maybe in abdomen, torax, maybe the doctor see the asymmetry for weakness, as i told you in the last post, i don't have money for some test, i need patience, and this is over for me, 4 years, the last 2 weeks i have facial problems in my right side, since then i feel strange when i smiled, i see a slightly weakness too, any of you have winged scapula? That's confirm FSHD.

Okay. I've had an M.R.I. of my brain twice. I'm not sure if it was all of my brain or some parts of it. They said it was normal. I've had an M.R.I. of the top of my spine. I've had bone density test around a year ago. I've had multiple blood test. I've had the test to check to see if your muscle nerves are working. I've had cat scans of my kidneys and some fat growth in my stomach area on the right side (some fat tumor thing). I've had a cat scan of my bladder too. My spine shifted and is no longer straight because of the atrophy happening to me. This happened two years ago when my symptoms started accelerating. I used to be stronger than most people, faster, etc. Now I'm weakening at a fast rate and looking like a bird. My shrinking is so apparent that my long-sleeved shirts now reach the mid back of my hand because I've lost mass in my shoulders. I was first affected in my lower left leg, then it went up and down (bottom of foot to top of head is affected). I took a break from drinking alcohol in 2020 for six months and the first day I went back to it the next morning my right side shrank too. The ENTIRE side. Before with the left side it was progressive and went in parts. The right side just shrank all together at once. The left side feels hollowed/disconnected; my right side is also affected - but, it still feels "solid." As I said before, this affects my internals too. My constipation has gotten so bad that I never really have a feeling to let go of stool except when it's in the very end of the digestive route. Even then, I'm not letting go all of my stool and I have stool retention. My penis is affected. I lost my ability to get morning erections and erections period back in March of 2019. One day I woke up without an erection. I always woke up with an erection since I hit puberty around 30 years ago. Ever since then my genitals have been shrinking too and they are inoperable. When I attempt to "let loose" I shoot out quicker than I should. My left testicle is more wrinkly than my right. My penis has less substance on the left side than the right. Though, this issue is affecting the totality of me - meaning the right side too. When this first happened I had tremors in the area that was shrinking. Just last weekend I was having a tremor in my right forearm, meaning that is shrinking/dying at this time. My lips once were experiencing a tremor before and they shrank. These corrupt doctors won't help me.

My first known symptom was lying in my bed the summer of 2019 and trying to go to sleep. The lower left leg of me would be shaking furiously. That's when I first started noticing this happen. I do think it was happening in late 2018 though.

What is your status now? Hope it's stabilized, mine keeps progressing. I'm coming up on five years since I noticed this problem (it first started in my lower left leg).

How is your status? Hope yours isn't progressing fast like mine. It's coming up on five years since I noticed (in the bottom of my left leg).

hello i am back with an update.

so, as i wasn't getting any better i decided to try and use the power of the brain to think the problem out of existence. aka mind over matter.

I was doing my normal thing and trying my hardest to drag myself here and there despite the aches and pains in my back, leg, foot and neck.

I went on a stag weekend with a bunch of friends (bachelor party if you're from the US)

Didn't pass out once. Didn't even allow myself to get as drunk as I usually would. However the stag weekend was in Edinburgh, Scotland. Which, if you've ever been is nothing but HILLS.

I'll be honest, i did struggle with the walking and with the hills and steps. going down is worse somehow.

Anyway I return home and rest from all the walking and sleep off the hangover.

About 3 or 4 days after the stag weekend, i woke up feeling very strange. I felt half asleep, or like i hadn't slept in days, and my brain was taking micro-naps. i just thought my brain was still partly asleep. i had only had 5 hours sleep that night.

The only issue is, this persisted all day, and driving home after work it was still happening. they were like micro seizures where i would lose a split second of time and my arms would jerk. These are what i came to learn are called myoclonic jerks.

after work i decided to drive to A&E.

they left me waiting there for 20 hours dismissing me and making excuses. i didn't sleep in the waiting room and the jerks became really frequent and i became really drowsy, stuttering like crazy, forgetting what i was talking about, struggling to understand the nurses, slurring my words and shuffling into walls. the nurses were concerned about a bleed on the brain so a CT scan was ordered.

i was told that the results would take a few hours. the neuro would have to come in for the morning shift and write a scan report.

i was sent back to the waiting room where i did some more shuffling, stuttering and then i was having bigger jerks. where people would look at me funny, all of a sudden i would have a big jerk and catch myself from falling to the floor. because my knees were buckling and giving out. these are called drop attacks. its sudden seizure activity that causes loss of limb tone so you fall to the ground. i had a few big ones of these and some bystander asked if i was ok because i was looking jerky.

i said no lol thats why im here.

i sat down again and thats the last thing i remember.

next thing, im waking up in a hospital bed in A and E. i ask a nurse whats going on. she says that i have had a full blown seizure.

a generalized tonic-clonic seizure, previously known as a grand mal seizure. I had cut my nose where i faceplanted the floor. i had bit both sides of my tongue so it was all swollen and bloody, and i had p****d myself.

im still really drowsy, forgetting things really quickly, pupils dilated and felt like i had been run over by a bus.

now i can no longer drive, or drink, and im on epilepsy medication. im getting double vision in my left eye so i cant even see the TV clearly.

i still get jerks and headaches and memory loss.

i have had a brain ECG and two MRIs, one with contrast agent. im sure they've found something but the NHS are so incompetent that no one is willing or able to give me any answers yet.

I'll keep you posted.

take care all,

Alex

Hey Alex, I've been off and on here for a bit now. I've had tons of tests run and finally was given a diagnosis of stiff mans syndrome. With the jerking your talking about, maybe you want to check that out?

I hope you're feeling better, your last trip to get care doesn't sound like much fun. The pain is the worst.

Hi, any updates?

Any updates? I'm still stuck in nowhere land. My main neurologist is useless, just like my primary physician. These doctors don't give a st and are on autopilot just for the check. They got their doctor degrees just to have a prestigious label because I'm having to tell them what to do (test wise). Fk these doctors, I'm going to get them back before I fall down.

Any update? I haven't gotten any of the tests you brought up. Why? Well, I forget about this thread often and don't have them in mind when I see my neurologist, whom I just saw but will see again soon for another EMG. I'm becoming progressively frustrated with the lack of effort by those I see. My life is stuck because this has rampaged my mentality, I'll only be able to move forward with a believable diagnosis. And if it's death, at least I get an answer.